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I feel like I am going mad, it has been such a horrible week, feel like throwing the towel in and sending George to a care home, he has been so agitated, I know it is not his fault, but it is not mine either.

We have been in the toilet at least 20 times today, he has called me about 50 times, he has opened his catheter, got hold of the bag and squirted the urine every where, the night before there was pooh everywhere.

This might sound horrible but I ask myself do I deserve all this, am I being selfish, just want a life, just want to sit down and not jump up every minute, not a urine infection, hopefully nothing sinister, how I hate this PSP. Feeling like I don't want to carry on our even be here, just want some peace in my life. Am I being selfish just fed up. Yvonne xxxxxx

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51 Replies

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  • No Yvonne you are most definitely NOT being selfish!!!!!

    You are BEING normal!!

    It's a continual living bloody shitty nightmare that just goes on and on and on......darling can you ask the hospice for respite? Or do you have chc? If so, get a respite break with them before you go loopy loo and lose the plot!!

    We are all here for you! Scream and shout as much as you want!

    Hugs x

  • Yvonne, you are not selfish...you are exhausted. And you are tired of seeing poor George in this horrible condition. Is there something that could be given to him to help him with anxiety? He, too, needs rest and time to regroup. Thinking of you and remembering the strong woman you are from reading your previous posts. Sending big hugs and offering prayers now on your behalf, as well as George.

    Ann

  • He has lorazepam, also have morphine, which I gave him. Just heard a bang gone in there and he is hanging out the bed, he has a hospital bed, but does not have the sides up, and he said he needed the loo, took him nothing, put the sides up on the bed, fingers crossed , we will sleep tonight. Sleep has passed me by xx.

  • Deepest prayers for sleep for you both.

  • I agree with Satt. Ask for some emergency respite. We all know it's not Georges fault, but equally, we know, there is no way he would behave like this in a home! A break from playing with his Catether, might stop him doing it.

    You definitely need a rest from all this. Especially if you want to carry on looking after George at home. That's not being selfish, it's being realistic. You need to stop the world quickly Yvonne, or else it will be forced on you. AND that is the last thing you want. You have fought so well and coped looking after George, get on the phone first thing tomorrow and sort out a weeks respite.

    Lots of love

    Heady

  • I agree with the others Yvonne you are under enormous stress and you need some respite now! We know exactly how you are feeling and sending you a great big bear hug right now xx

  • Thank you all, i am going away on the 10 february, with my daughter, really looking forward to it. Just felt tired from a hard weekend. Not long to go until my break. Yvonne xxxxx

  • Hi, I am really happy to read that you are going away in a few days. I would still look into regular respite though. Having Steve going regularly into the home, certainly gave me that much needed break and something to cling on to, in the dark hours, knowing I was going to get some rest. Also, the safety net, that should I have to, he would be going into a place that he knew. That last week, that was potentially, so awful, seemed a lot better, as I had booked him into the home full time, just waiting for a bed to become available. Guess Steve pipped whoever, to the post!

    Lots of love

    Anne

  • Anne will do I think I need it xxxx

  • Yvonne my heart goes out to you - of course you are not being selfish nobody should have to go through what you are going through.It really sounds as if it is time to make other arrangements however hard that may be .

    love Georgepa

  • Kettle and black come in mind!!!!

    Lots of love

    Anne

  • Rasberries to you Anne - and for the record V is in the Hospice this week and I have fixed up care at home at the end of February for a four day break - so there !!!!!!!!!!!

  • Good for you George, I think you need it more than any of us xxxx

  • Well done, George ! There's hope for all of us !

    xxx

  • Easy Tiger!!!

    That's brilliant news. Enjoy your break George. You never know, you might find that you actually get some rest and are able to cope that tiny bit better when you get back.

    When you say V in the hospice this week, how many days? What are you doing? Fancy lunch?

    Lots of love

    Heady

  • Went in last Friday coming home on Thursday .Kate is down for the week -so we have been sharing visiting and discussions with Drs etc . Its a brilliant place and the staff just fantastic . Wednesday could be a possibility- will give you a call .

    Georgepa

  • Yvonne you are not being selfish, I understand exactly where you are, nobody deserves PSP in their lives, (well I guess there could be a few evil deserving people, and apologies to those who don't think like that!)

    I'm free Wednesday if you want to meet?

    Lots of love

    Debbie xxx

  • Debbie sorry Wednesday is the day my daughter goes to college and I pick up my grandson from school, would love to meet up though, if you can make another day, hope you are ok Debbie xxxx

  • We're not having much luck in meeting up! Monday 6th? Xxx

  • Yes that would be great I can do that day xxxx where do you want to meet? X

  • Hi, glad to see that you are getting out and about. It's so tiring though, isn't it??? I don't feel I have any stamina. Still I have to keep reminding myself it's still early days. Feels a life time ago.

    Lots of love

    Anne

  • Yvonne

    I thought I was having it hard...

    PSP has stolen the joy out of my life, hope and something of a future to work toward. A dream of how life could be better.

    That sounds minor, but joy and hope and a better future are very deep in the human psyche as things which make life worthwhile. Without them life is pretty intolerable. Even with love.

    You are describing something else on top as well.

    Yes, we have a milder version of that here too.

    PSP is crippling for carers too.

    Every day I summon the will to make it through. On bad days I try to set asside my fear of being summoned to do care only to get another heart crippling experience.

    My heart is with you.

    Hugs

    Kevin

    X

  • i agree e k

    lol jill

    xxxxxxx

  • Yvonne you need to send him to a Nursing Home, not a Care Home. My husband is in a Care Home but now has to move to a Nursing Home. I have been to see another one today. This one was the best so far. At least the bedroom is a decent size! He wants to come nearer to me but this is almost as far away as the Care Home!

    So if you are such a horrible woman what does that make me or the other people who had to throw the towel in? You are human, this is becoming too much for you. I honestly don't know how people manage to keep going until the end.

    My husband cried so much today that it really got to me. The difference is you can sleep at night and when you visit him it will hopefully be a nice time for you both. Unless like my husband he is prone to crying? Then it can be upsetting. The thing is he would do it at home too? I have to remind myself about that.

    There are times I have considered moving in with him to be honest. Sounds mad now I see in it print! Once PSP enters the door our lives are never the same again. All we can do is the best we know how whatever that might be?

    Take care of yourself Yvonne. Not long to that holiday? Please don't be so hard on yourself.

    Marie x

  • You are not selfish. You are human trying to deal with a horrible situation. I go through it too.

  • hi Yvonne it seems like we have been down this road before mate well you take time off for oilety NOW YIU TAKE A BIT OF TIME OF MATEY IF HE HOLLERS FOR AS TOI;LEY LET HIM HOLLER JUST SITY DOWN ANFFD RELAX WITH A SOFT DRINK IF YOU LIKE OR STRONGER ONCE HEDS BEEN TO THE TOILET THERES NO HURRY IS THERE SO MAKE THE BEST OF IT YOU HAVE ONLLY GOT TO CLEASN UP

    GERORGE BEHAVE YOURSELF WILL YOU ANFD GIVE YVONNE A LITTLE BIT OF PEACE WHICH SHE DESERVEDS MATE PERTER JONEDS QUEENSLAND AUSTRALIA PSP BLOKE LIKE YOURSELF MATE

  • Yvonne, please don't think it's 'throwing in the towel' if George has to go into a nursing home. It is just another phase of the illness. You may well be able to look after him better with the back up of full time nurses and the benefit of a full night's sleep for you. Everyone needs extra help in the end whether it's at home or in a nursing home - you can't do it all by yourself!

    Hope you enjoy your break with your daughter.

    Vicki x

  • Thank you everyone much appreciated ❤

  • Hi Yvonne, you are definitely not selfish. You have given your all to looking after George for over 2 years, you are just tired. Time for some respite for you. I'm glad you are going away with your daughter soon, that is something to look forward to. I hope you have a wonderful time. Lots of love Nanny857xx ❤

  • Thank you, how are you? Xxxx

  • I'm doing fine. I did the 'Couch to 5K' training sessions with my sister before Christmas and we got the T-shirts!! Now we have graduated to the 5k Parkrun on a Saturday morning. I've done 4 so far but I'm out of action at the moment, twisted my back cleaning windows!! You're probably thinking I'm mad, starting up running at 65, I thought that too when running round the circuit at 6 o'clock at night in 4°degrees ❄ but a great feeling at the finish.

    Where are you going on holiday?

  • I use to belong to a running club, when we lived in London, well done to you, look after your back. We are off to Cyprus, not going to be very hot, but just want to chill and sleep, sit on the balcony and chill out. Yvonne xxxx

  • Sounds idyllic. We have just booked a week in May in Portugal. Didn't want to book too far in advance but W is still on his feet and able to get around - albeit very slowly, but I'm thankful for that. xx

  • Have a lovely time something to look forward too xxxx

  • I do hope you remember this, Yvonne, the next time you think of feeling guilty about your planned vacation! It sounds like a nightmare, worse than I have experienced, and I have seen more than I ever wanted to! My very deep sympathies. But really, maybe you should be looking at care homes? Even if just so you know there is an escape hatch handy. It might help you to cope. Hugs and love, ec

  • Absolutely not selfish just an amazing woman pushed beyond human endurance. Agree with all of the suggestions about Respite please ask for help. A breathing space and sleep will make a huge difference.

    Sending love and hugs

    Tippy xx

  • You arent being selfish at all.All those things were happening at our house.I could cope no longer.Dont beat yourself up x

  • Of course you're not being selfish. You sound like a saint to me. I would have blown a gasket if I had to put up with what's you've been coping with. Stop beating yourself up, you're only human at the end of the day. Do what is right for you. Marie

  • i age e with what you all say#lol jill

    xxxxx

  • No Yvonne, you are NOT being selfish - just human like the rest of us ! PLEASE consider a nursing home for George - it is not `throwing the towel in`, it is just another stage in this awful PSP.

    Taking P to the home was, without doubt, the hardest day of my life but he has settled ok and we look forward to seeing each other every day. He is more calm now and everything he needs is there and all his needs are catered for. The memories of how things used to be when he was home (total nightmare) are being replaced by better memories of the time we spend together now.

    xxx

  • I am praying fie you. I agree with all the others. You need a break. If he needs a nursing home than that is the way it has to be. It appears that G is also stressed. You can take up your roll as wife if others looked after his physical needs. God bless you both.

  • I so relate to you, Yvonne.

    We are no-where near your situation but it still leaves me feeling so bad about myself a lot of the time. It is awful because even an improvement would be pretty bad and short-lived. Its hard to feel good about yourself.

    It is just torture for both of you.

    I hope you can hang in until 10th but arrange more support anyway.

    Lots of love and a big hug, from Jean xx

  • You seem to have gotten to the stage when my dad had to give up. It is unbearable to cope on your own. Mum was constantly getting out of bed or calling dad during the night and he became bad tempered and exhausted. The toilet situation is unbelievable to people with no knowledge of this illness. Mum ended up with a catheter and she was pulling that out 3 or 4 times a night !!!! It's cruel to patient and carer and you need help Yvonne. I am sending you massive hugs xxxxx

  • Yvonne please believe me when I say one day you will miss all the never ending horrors of PSP, I used to always be saying I wish I could sit for a while and rest and now that I can I actually miss it! Does that sound crazy?

    Thinking of you Yvonne, stay strong,

    Love and a big hug....Pat xx

  • I understand you Pat! Then, you didn't need to plan time. PSP planned and filled all space and you could only think "What if..".

    Now the " what ifs" don't come to mind and folk don't always ring you!

    Try making a calender for a couple of weeks, include going out for a walk, go to movies, browse shops, meet a friend. go to library. It may not help, but every now and then I get it right!

    Ignoring everything and reading a book seems to be my best medicine. Shopping does not always happen. Today I am going to make it happen! Right after I have finished here!

    Have found I have changed from always going out before PSP ( escaping) to staying in most of the time (not sure why yet!). Maybe sticking head in sand antic! Today am going OUT!

    Hope you find your feet soon. It does take effort and seems to come in phases!

    Hugs

    Jen xxx

  • Thanks Jen your words speak a lot of sense to me, it's just such a horrible situation to be in, before and after the end, you just can't win with the evil PSP, the only thing that keeps me going is the fact that Keith no longer has to suffer all the indignities that this horrible disease brings with it!

    Sending you my love and hugs....Pat xx

  • Thanks!

    NOW I am going out!

    Hugs

    Jen xxx

  • Good for you, what on earth is the time where you are? I'm off to bed now and I'm late! ....xx

  • It was 1.00pm. Hope you have slept meantime! Went to do shopping I put off all week, and decided I could go to movies too!

    Go and see "The Great Wall"! Have come back feeling much brighter! Movie has no swear words, no human blood or body parts in detail, some humour and no sex! Not what I expected but enjoyed every moment!

    So it's just a case of " doing" rather than just thinking and putting it off!

    Now it is nearly my bedtime!

    Hugs

    Jen xxx

  • Pat I can understand what you are saying, been thinking about you, how are you? I am sure it must be very hard, I am sure your family are looking after you, hopefully in time you will feel better, and remember all the good times, I bet there is so much to remember. Sending you a big hug Yvonne xxxxxx

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